Tuesday, July 23, 2013

Coming Out - World Sjogren's Day pt. 1

2013 has been a challenging year so far. I am not sure how many of you noticed that I fell off the face of the blogosphere in late February. At the time I hit crisis mode and I just couldn't share what I was going through here. I usually don't even share my health issues of Facebook with my close friends. Finally things are settling down in my life and I decided that I would "come out" so to speak. 

So here goes...I apologize in advance for the length and the lack of quilty pictures.

In early January one morning I woke up and my fingers were swollen like sausages. I couldn't get my wedding band off. My fingers couldn't bend. The swelling didn't go down until about lunchtime. The next day when the same thing happened, I started to worry. I have a friend I have known since high school and she was diagnosed with Psoriatic Arthritis just months before and thankfully she is very open about her health issues on Facebook. She mentioned that her fingers were like "sausages" in the morning and she ignored it for nearly a year. Because of her openness, I knew it was not a good thing to postpone diagnosis, so I immediately called my doctor and made an appointment. (Thank you H!) That day the swelling in my fingers didn't go down until nearly 3pm. I was beginning to panic by the third day when it was more of the same. It was now interfering with my ability to work and turn assignments in on time. Not good!

When I spoke with my husband, he raised several concerns pointing out several things that had been going on for more than a month:
  1. Since early December I kept feeling like I was "coming down with something". Our daughter had been fighting a stream of colds and I just assumed I was fighting her germs. I never got sick. 
  2. Two weeks earlier, I couldn't get out of bed on Saturday. Again I thought I was fighting something. When hubby got home from his morning run, he said my lips were blue. He said it scared him, but he didn't say anything. 
  3. My joints had been more achy than usual. I have had arthritis for many years and had controlled it for 5 years simply by becoming vegetarian. Suddenly, I was fighting joint pain again. I thought it was due to the weather. 
  4. I was thirsty. No, I mean, couldn't get enough fluid during the day. I had taken to drinking herbal tea all day long just because I was getting tired of water. I was drinking at least 80 ounces per day and was still thirsty.  
  5. Slight discoloration in hands and feet at times that looked a bit blue.
  6. I had four bouts with major canker sores in the previous 8 months. I would get one canker sore and then within a few days I wouldn't be able to eat. The most recent bout, I had 20 canker sores at the same time.
I was really grateful that my hubby was able to help point out these syptoms. I wasn't noticing that anything was wrong or not normal. I was just being a busy mom during the holidays. He helped me piece together what I thought was unrelated and made me realize that this was not normal.

I visited my doctor and she was quiet while she listened to me read off the list that I promised my husband I would show her. She said she would order blood work. Normally, she sort of works out what she is thinking aloud. This time,she was quiet.  It made me nervous that she wasn't her usual chatty self. When I called her on it, she simply said that it sounded like something "autoimmune"was happening and we would wait for the blood work. 

The blood work came back and I got an email with the results (I have an online account that saves all of my appointments and tests). I had a positive ANA and elevated SSA and RNP. I had no idea what that meant. Later that day, I got a call from a nurse at the office that I needed to make an appointment with a rheumatologist. I had a few elevated results. 

The doctors that I was given numbers to call wouldn't be able to see me before mid April. It was early February. There was no way in hell I was going to wait months not understanding what my blood work meant and having my hands swollen every day. I would lose my freelance writing gig. I went into panic mode which resulted in becoming the google doctor.

Finally, I decided to tell my editors at GenQ, Jake and Melissa what was going on. They were more than supportive. Jake gave me a firm talking to about trying to find another doctor - she even offered to do the research for me. I kept googling and calling until I found a doctor that is in the same office building as our pediatrician and he could see me the following week! Convenient and nearby!

My appointment was on February 25th. My hubby came with me to the appointment. By now, I had realized that it was narrowed down to only a few autoimmune disorders. Rheumatoid arthritis, Lupus, Psoriatic arthritis, Sjogren's Syndrome, or Mixed Connective Tissue Disease. Shit.

My doctor was very kind. He is a bit chatty and seemed to want to talk cars with my husband. He looked at the blood work and ordered more. He said we needed to get a better look at what was going on. He asked if my mouth was dry? Yes. What about my eyes? A little bit maybe...

Sjogren's Syndrome (pronounced SHOW-grins) is the most common autoimmune disorder affecting 4 million Americans. Nine out of ten people diagnosed are women. It affects your moisture producing glands causing dryness in the eyes, nose and mouth.  It causes joint pain and extreme fatigue. It can affect other organs of the body and there is a higher risk for developing lymphoma. The average length of time it takes to diagnose Sjogren's is 4.7 years. This is because most doctors aren't very well versed in the symptoms. This is the disease Venus Williams was diagnosed with when she was forced to drop out of the U.S. Open. There is no cure. 

I will post a part two to let you know a bit more about the disease and what it does. It makes no sense to me that this is the most common autoimmune disorder and no one has heard of it. July 23rd is World Sjogren's Day and I write this post in the hopes to raise awareness. Visit the Sjogren's Syndrome Foundation for more information.

All right, I think I have tortured you all with such a long post and no photos. I feel bad... Maybe I should just add some photos to make up for it...

A pillow I made for Cyd in Lisa Sipes' class at the Sewing and Quilting Expo
Cyd and I taking a class with Cheryl Sleboda of www.muppin.com

 See? Life goes on and smiles still happen. It's not the end of the world. Life is still good and I have a wonderful family. :)

 Thanks to all of you who actually made it to the end of this LONG post. Luv ya!


  1. Hi punkin - so many prayers and a great big hug being sent your direction. XOXO

  2. Wow, please keep us posted on your progress, and thanks for sharing your story!

  3. So glad you felt you could share...knowledge is power. Your post will likely help someone else who may experience the same thing and not know what to do....and perhaps someone reading this will have some helpful knowledge for you.
    Sending cyber hugs....

    1. Surprisingly that has already happened! Amazing! Thank you Penny!

  4. Read your post with great interest and fear for you! Looking forward to future installments as I want to make sure you'll be OK!

  5. Love you! You are a huge part of my living with Crohns and PSA. I have learned more about my diet affecting my diseases from YOU than I have from my 2 GIs, 1 rhumey, 2 primarys, 3 surgeons and 1 neurologist!! (still ain't drinking that mold juice though....)

    1. Hold on to your seat, H! Cause now I need to learn about anti-inflammatory diets! A friend of mine is doing gluten free-vegan and says it helps. ;) Thank you sweetie! I swear Kombucha is GOOD!

  6. Tracy i just found this. I told you I haven't been on the computer to much accept for early in the mornings when I usually can't sleep. I'm proud of you for sharing this for a few reasons. The first being it's not something you want to talk about, it's actually hard to talk about (accept for like you said with close friends). I'm also proud of you for doing it because we both have learned through the years how hereditary autoimmune illnesses are, and it may help other people. We both have way to much experience in autoimmune, and maybe this can help someone else that might read it. The last reason is that you've always been somewhat of a light for me because of your ability to always put on that happy face even when I know your in pain and uncomfortable. It's hard to put a good spin on life when your in constant pain, Pain that no one else can see. Makes it easier to not talk about, but not easier to deal with. Good job Sis!


Pin it